Annual Chromosome 18 Conference 2018 Part 5

Hey, everyone! I just got back from a trip to Baltimore for the annual Chromosome 18 conference. This blog post is a summary of what I did at the Chromosome 18p- conference this year. I hope you enjoy reading this blog post. In case you’re wondering, the links are Thomas’, Camilla’s, and Chromosome 18’s website.

Here are some similar blog posts: http://lilliandarnell.com/2018/06/15/my-adventure-to-surprise-part-1/ and http://lilliandarnell.com/2017/09/13/annual-chromosome-18p-conference-2017/. Anyway, I hope you enjoy!

July 3rd: 

I woke up at 8:25 am. Again Camilla called room service so she could order breakfast shortly after I woke up. At 9:23 am, Macy was outside my hotel room. Anyway, I let her in and I had already started getting ready to go down to the 5th floor.

So I finished getting ready quickly. Instead of going to the 5th floor though, we explored the hotel floors again. Eventually, Macy and I went into her hotel room and we hung out in her room there.

We sang a couple of songs from Youtube (luckily my throat wasn’t dry) before deciding to go down to the 5th floor. At 11:30 am, I went with Macy and Katie to listen to the pre-self-advocate panel in a certain room.

The pre-self-advocate-advocate panel was finished at 11:45 am for lunch. Macy’s parents weren’t out of a session yet so she asked if she could sit with me for lunch. I was perfectly fine with that.

I ate most of my lunch while waiting for Macy to get her water. I ate my dessert while waiting for Macy to get her dessert. After we both finished eating lunch, we went back up to Macy’s hotel room for a few minutes before heading back down to the 5th floor.

Macy and I hung out with Katie, Kaylyn Earl (an 18p- friend), Rebecca, Irene Mckay (an 18p- friend I’ve known), and Remy before my friends had to go to the certain room. Also, Macy and I got our photo taken as well. At 2:15 pm, Macy came out to take a break and I hung out before Macy and Rebecca had to go back to the certain room.

I went up to the room again until 3:00 pm when I went back down to the 5th floor. At 3:10 pm, Macy came out and we hung around the 5th-floor talking and giggling (or laughing, whichever you want to call it).

At 5:00 pm, I went down to the lobby with Macy to see Macy off for Self Advocate Dinner (didn’t go since it wasn’t my type of food). At 7:28 pm, Macy messaged me through Facebook Messenger saying she was on the 5th floor.

So I headed back down to the 5th floor right away. After that, we went up to my hotel room to hang out and talk until 9:50 pm. I decided to go down with her to right outside her hotel room and then I went up alone thinking and daydreaming (at night while awake).

Then I got ready for bed and went to sleep late that night wondering what would happen tomorrow. I was excited that the next day was the 4th of July. I went to sleep happy but tired.

Me and My friends

See part 6 here

Annual Chromosome 18 Conference Part 3

Hey, everyone! I just got back from a trip to Baltimore for the annual Chromosome 18 conference. This blog post is a summary of what I did at the Chromosome 18p- conference this year. I hope you enjoy reading this blog post. In case you’re wondering, the links are Thomas’, Camilla’s, and Chromosome 18’s website.

Here are some similar blog posts: http://lilliandarnell.com/2018/06/15/my-adventure-to-surprise-part-1/ and http://lilliandarnell.com/2017/09/13/annual-chromosome-18p-conference-2017/. Anyway, I hope you enjoy!

July 1st: 

I woke up at 8:30 am but again I took my time getting up and get ready to go down to the lobby. Camilla was in the room getting ready to call room service to order breakfast when I woke up.

It wasn’t until 9:00 am that I went down to the lobby. I went up and down a lot in the elevator.

At 9:50 am, I saw Rebecca walk in. My grandmother Patty started doing a Facebook Video Chat with me so that Rebecca met Patty virtually since my grandparents are considering going to the conference next year.

Shortly after that, I went up to go to the restroom. I went up at 12:15 pm to grab a fruit bar to hold my stomach in. Anyway, I grabbed a sip of water and made it back down at 12:30 pm. At 12:30 pm, I was chatting with Macy through Facebook Messenger.

At 1:00 pm, Thomas and Camilla came back from outside bringing french fries from Dick’s (a restaurant) with them. That was my lunch. At 1:30 pm, I went back up. At 2:30 pm, I went up to the 5th floor to get my name tag and I hung out there. Before I went to get my name tag, I ran into Katie.

I was actually up in the room fixing my bag when I got a Facebook message on Facebook Messenger from Macy saying that they were at the hotel. So I finished doing what I was doing and let Macy know that I was heading down.

I ran as fast as my legs could take me to the elevators. Unfortunately, the elevator had a couple of people getting on slowing it down a bit but luckily they were all getting off at the 5th floor (they were part of the conference too).

Once I got down to the lobby, I calmly walked over to the spot I sat in that morning and let Macy know I was there. She turned around and saw me. She walked over and talked to me. Shortly after that, Macy went to the elevator area with her family.

The elevator was slow coming down so I was able to sneak into the elevator with them. It was a little squished in there but we thought that was funny (I normally wouldn’t like that).

After I went up to the room to rest, I headed back down to the 5th floor knowing that Macy would be down there soon. She Facebook Messaged me asking where I was. Anyway, I got down there and saw Macy standing at the entrance of the registry’s chosen room to get name tags.

I stood next to her while Macy waited for her parents. I was able to choose 2 spots where I could watch her move along. Eventually, she came over to talk to me again. I showed her where the public restrooms were. I decided to come along to see what the bathroom was like.

Anyway, I patiently waited for Macy to be done. After Macy and her family decided to go up the elevator and once again I was able to get on the same elevator as them. So I started to eat some leftover french fries for dinner when Macy Facebook Messaged me.

Macy was asking if our family wanted to go out to eat with their family. I wasn’t sure so I asked Macy what restaurant they were going to. Macy said Blaze Pizza in Facebook Messenger.

I looked it up to see how far away it was from the hotel. I figured it would be okay to go I asked where we needed to meet up at through Facebook Messenger. So, we got ready and went down to the lobby to meet up with them.

So we walked to the restaurant together. We ordered first while Macy and her family ordered last. Since there was a long booth, I decided to sit there and there was enough space for us to sit together.

Anyway, we left at 7;00 pm with Macy. We went up together to go to our hotel rooms. Once I put away my sunglasses, I went down to the social and met up with Macy there. After some time, Macy and I got bored so we went up the elevators to show each other where our rooms were.

Shortly after heading back down with Macy, we chatted with new friends and old friends until 10:30 pm when we were both so exhausted that we all went up to our hotel rooms for the night. Again I tried to go to sleep early but I winded up going to sleep at 1:00 am again. That night I went to sleep feeling blessed, relaxed, and relieved from stress and pain.

Macy and me.   Borrowed from Camilla

See part 4 here

Annual Chromosome 18 Conference Part 2

Hey, everyone! I just got back from a trip to Baltimore for the annual Chromosome 18 conference. This blog post is a summary of what I did at the Chromosome 18p- conference this year. I hope you enjoy reading this blog post. In case you’re wondering, the links are Thomas’, Camilla’s, and Chromosome 18’s website.

Here are some similar blog posts: http://lilliandarnell.com/2018/06/15/my-adventure-to-surprise-part-1/ and http://lilliandarnell.com/2017/09/13/annual-chromosome-18p-conference-2017/. Anyway, I hope you enjoy!

June 30th: 

I woke up at 8:30 am the next morning to plug up my electronics. After I did that, I fell back to sleep until 10:00 am or 11:00 am. Once I woke up again, I felt much more relaxed and relieved.

So I took my time eating breakfast, getting dressed, and eating candy (it was Candy Day). After I finished eating my candy, I went to the elevator area to head down to the lobby.

So I waited for the elevator to come. I got down there at 11:30 am and I stayed down until 11:40 am when I started to get hungry. I ran into a lot of my 18 p and q friends as well. So I headed back to the elevators to head to the room, I ate a fruit bar and grabbed a sip of water as well in the room.

The elevators had funky music playing and had blue lights on. It took some getting used to that. Anyway, the elevators were interesting. You could actually hear the robotic voice of the elevator on a different floor and you could hear the elevator stopping at your floor before it even opened.

Once again, I headed back down on the elevators. I got back down there exactly at 11:50 am and I chose a good spot to sit where I could greet my friends. Camilla came and gave me french fries.

After I finished eating lunch, I chatted with Macy through Facebook Video Chat. I took a selfie right there too as well. I went up to the room again at 5:00 pm to eat dinner and decided to check out the 5th floor early so I was comfortable with where everything was.

After that, I went to the 7th floor to take a sneak peak of the pool. When I finished, I went up to the room to get ready for bed and finish chatting with Macy for the night.

Around 12:30 am, I fell asleep as I knew that Sunday would come more quickly if I went to sleep earlier.

A selfie of me.

See part 3 here

My Adventure To Surprise Part 11

Hey, everyone! I went to Surprise, AZ for the end of May/beginning of June with my grandparents (also known as The Romano Duo). I would just like to share my adventure with you. By the way, some of the times aren’t accurate. Anyhow, I hope you enjoy!

June 8th, 2018: 

I woke up at 8:00 am with itchy ankles. When I went into the living room, I noticed familiar swollen bumps (mosquito bites). So I spent the day trying to stay off my ankle but I did get up to pack a few things throughout the day.

I ate lunch at 1:00 pm. I also colored that afternoon until evening. After dinner, I colored until 9:00 pm. I started my schedule and finished at 9:35 pm leaving me 35 minutes to spare so I started playing games on my phone until it went dead.

By that time, it was 9:57 pm so I just helped Patty and Frank with decisions for the trip back to Reno until 10:00 pm when I got into bed. I tried to go to sleep at 11:15 pm but realized I needed to go to the restroom so it wasn’t until 11:30 pm when I went to sleep.

Mosquito bites on my ankle

Mosquito bite on the bottom of my foot

See part 12 here

My Adventure To Surprise Part 10

Hey, everyone! I went to Surprise, AZ for the end of May/beginning of June with my grandparents (also known as The Romano Duo). I would just like to share my adventure with you. By the way, some of the times aren’t accurate. Anyhow, I hope you enjoy!

June 6th, 2018:

I woke up around 8:00 am. I decided to have a resting day. After breakfast, I played on my phones and read. After lunch though, I got ready to get in the pool and only stayed in the pool for 30 minutes.

Afterward, I got dressed and headed into the living room to color some more in the giant coloring pad.

After dinner, I continued coloring and played on my phone some until I started my schedule. As usual, I got in bed at 10:00 pm but stayed awake until a little past midnight.

As you should know, I went to sleep past midnight.

June 7th, 2018: 

I woke up around 7:00 am. So I got up and decided to feel relaxed until the end of my trip. Anyway, I ate breakfast and decided to color in the giant coloring pad. I started feeling hungry again. After I ate, I colored more, read, and played on my phone.

After dinner though, I started coloring some more. Afterward, I took a long break and sat outside until I had to do my schedule. I managed to get into bed at 10:00 pm. I went to sleep shortly after midnight.

Me with a pool noodle

Me with Frank Romano

Amazing sunset

Gorgeous sunset

See part 11 here

My Adventure To Surprise Part 9

Hey, everyone! I went to Surprise, AZ for the end of May/beginning of June with my grandparents (also known as The Romano Duo). I would just like to share my adventure with you. By the way, some of the times aren’t accurate. Anyhow, I hope you enjoy!

June 4th, 2018:

I woke up around 8:00 am. I decided to make that day a relaxing day as well. So, I just played on my phones, ate meals, and colored in my giant coloring pad until my finger hurt. While I took a break, I sat outside and got to see an awesome sunset and a real hummingbird. I was able to get a few pictures (the hummingbird is now a guest visitor at the Romano Duo backyard)

Anyway, I got into to bed around 10:00 pm that night but I stayed up until 12:30 am that night.

June 5th, 2018:

I woke up at 9:00 am that day. Shortly after breakfast, I played on my phones and read. After lunch though, Patty and I went to the Surprise, AZ library (has a real name) to get me new books.

We were in and out in just 30 minutes which was crazy because I usually take 1 to 2 hours in libraries. Anyway once we got back, I colored some more. I managed to take a picture of a fully bloomed rose plant as well that day.

Around 8:30 pm, I sat outside to get fresh air. I also got more magical photos of the sunset. Again,  I got into bed around 10:00 am but played on my phone and read. Around 12:00 am, I went to sleep.

Me wearing a beautiful new shirt.

Sunset

Beautiful sunset

Beautiful clouds with trees

Gorgeous sky

Awesome sky with the sun shining

A camouflaged clock that shows the time and temperature

Magnificent sky!

Unique sky!

Beautiful rose

See part 10 here

The Hummingbird Fairy Wings

Hey, everyone! I got the idea to write a story about a hummingbird when my grandmother Patty of the Romano Duo remarked,”The hummingbird wings look like little fairy wings.” in Surprise, AZ when I was visiting Surprise, AZ. Thank you, Patty! Anyway, I hope you enjoy!

Once many years ago, there lived a hummingbird named Abby who was very curious. One day, Abby wondered, “Why do I have such small wings?”. So Abby asked her mother and her mother responded, “Well, there was a fairy named Rebecca who was very curious just like you, Abby.”

Abby’s mother paused for effect. Abby’s mother continued her story,”One day, Rebecca saw some flowers that had delicious nectar and she starting eating nectar. Suddenly, Rebecca noticed a sudden tingling coming from her wings. ”

Abby’s mother smiled and stopped to catch her breath. Abby said impatiently,”Hurry up, mother! I want to hear more of the story.” Abby’s mother said, “Ok, I was just catching my breath.”

“Rebecca wondered what was happening and asked her mother what happened. And like me, her mother told her the answer through a story. By the time her mother finished the story, Rebecca turned into a hummingbird.”, said Abby’s mother knowingly.

“So Rebecca went to a wizard to get a special spell that would allow her to swap back and forth between a fairy and a hummingbird. And she still can be found today as a fairy and hummingbird.”, explained Abby’s mother. After Abby’s mother finished her story, her mother asked, “Would you like to know a secret?”.

Abby said excitedly, “Yes, please!”. So her mother said, “I am Rebecca. That is my secret now.” Rebecca laughed when Abby said, “I knew there was something magical and musical in you.”

If you see a hummingbird, that may be Rebecca or Abby flying by. Anyway, that’s the end of the story. I hope you enjoyed!

How Donuts Came To Be

Hey, everyone! As you know, summer is coming up (for some) so in honor of National Donut Day and First Day of Summer, I’ve decided to create a special summer story. I hope you enjoy!

Once there lived a donut named Sprinkles who loved to play in her huge backyard. Meanwhile, there lived a popsicle named Lemona who loved to drink lemonade and sing all day.

One day, Sprinkles invited Lemona to her backyard for a summer party. Sprinkles had also invited her donut friends.

Lemona arrived first to the backyard shortly after Sprinkles had sent out the invitation to Lemona. Sprinkles was very surprised when she saw Lemona coming to the backyard.

“Am I early to the summer party?”, asked Lemona. “Yes, you are early. I suppose I could use some help and a friend too.”, said Sprinkles truthfully.

“Sure, I would love to help you set up your summer party. “, said Lemona honestly. After a hour had past, Sprinkles’ donut friends started to arrive. A couple minutes later, Lemona’s popsicle friends started to arrive as well which was a big surprise for Lemona.

Sprinkles’ friends commented, “What an awesome party! We should come to your parties more often, Sprinkle!”. Sprinkle said, “Thank you! I couldn’t have done it without Lemona.”

Lemona’s friends remarked, “I agree, what an amazing party! We should go to parties all the time.” Lemona said, “Thank you! I’m the one who set up the party.”

Unfortunately, the fun had to end too soon. When Lemona hugged Sprinkles, chocolate got on her icy dress. While Sprinkles got lemon juice on her, she was happy that her party was a sucess. So if you see a donut that tasted like a popsicle, that might be Sprinkles and Lemona.

That’s the end of the story.

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Beauty in You

Hey, everyone! I’m sharing with you some beauty tips, health tips, and other tips. I hope you enjoy!

Using Coconut Oil:

Coconut oil is excellent for dental health. After brushing teeth with your regular toothpaste, put coconut oil on the toothbrush, and brush your gums and teeth. This will feel awesome. It leaves your teeth feeling smooth and freshens your breath. The toothpaste that I use is Auromère.

You can spread coconut oil on your bread or waffle before putting it in the toaster too.

Using Something to Keep Your Hair Out of Your Face:

I prefer headbands or bobby pins but you can use hairstyles, hats, clips, scrunchies, and more depending on your hair length. I suggest if you want to grow out your hair that you use bobby pins or headbands.

Putting Something on Your Eyes To Protect Your Eyes From Sunlight:

Select 100% UV protection sunglasses. You can get a design on your sunglasses that you like best. For example, flower sunglasses, summer sunglasses, fairy sunglasses, or princess sunglasses are all some suggestions.

The Food You Eat:

Healthy foods like organic fruit, organic vegetables, protein, healthy oils, water, and whole grains are mostly what I eat. If you want candy, get organic candy with no artificial colors, additives, preservatives, or high fructose corn syrup. If you want cookies, get organic cookies. If you want cake, make a homemade cake with organic ingredients and if you want chips, find organic chips at Whole Foods or Trader Joe’s or wherever you shop.

Exercise:

I suggest exercising once a week when you are just beginning exercising. Once you’ve gotten good at doing exercising once a week, do twice a week to make it a bit challenging. Repeat this until you’re doing it, 7 days a week.

Try using beginner yoga, wall sits, air cycle, windshield wipers with your feet. After that, you can try harder yoga and so on. You can use dancing, gymnastics, and walking to help you get stronger and flexible. You can try weight lifting but take it easy with weight lifting.

Paint Nails:

If you are going to use nail polish, try using Mineral Fusion or Zoya nail polish or any brand without harsh ingredients. If you can, leave your toes, hands, or both unpainted or put just a clear polish on your toes, hands, or both to make them look glossy.

Bathing:

Use Aveda shampoo and conditioner (or other brands with natural ingredients as what we use on our hair travels into our body) on your hair when you wash it. If you prefer every other bath/shower day to wash your hair, go for it. Camilla does it for me once a week.

I bathe with Whole Food’s scented soap most of the time. If I run out of scented soap, I use Dove’s unscented soap.

The Drinks You Drink:

I suggest drinking just plain spring water if you can. Better yet, to begin the day with squeezing half a lime or lemon in your water. This will help wake up the water. If you don’t like to drink water, try drinking juice at least once a day. Be sure to get fresh squeezed juice or fresh pressed juice. Stay away from juices that are made from concentrate.

Depending on your body, you might want to find out how many cups of drinks your body might want. For me, I drink 2 cups of water and 1 cup of juice. It’s still okay to drink something when you’re thirsty unless it’s wine, coffee, or any drink that makes you hyper.

Apple Named Calm Sparkle

Hey, everyone! Are you wondering who Calm Sparkle is? If you answered yes, you’ve come to the right place. Read on to find out.

Once there lived a small apple whose name was Calamity. The apple didn’t know how to say Calamity but she was able to say,”Calm Sparkle.” So her name was shortened to Calm S.

True to her name, she grew to be a big calm sparkly apple. One day, she didn’t seem so calm. She explained,”I’m just anxious to see my relatives. The last time I saw them was when I was a small applet.”

So as time went on, she wasn’t calm at all. After her relatives left, she admitted she outgrown her calmness. The apple asked for help and everyone tried to help.

One spring morning, she felt unusually calm. She suddenly realized her calmness had returned. When she announced her calmness had returned, everyone clapped and cheered.

To this day forward, she can be found in everyone’s heart. She might be hiding or showing her calmness to your inner self.

Yummy pink apples!

I hope you enjoyed!

I help to support my family with my writings. I share my writings for free for the benefit of others. If you benefit from this writing, would you like to toss a tip in the love offering “bucket”? Oceans of love and gratefulness …xoxo

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